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I for one don't think you're taking it too seriously. If an organisation isn't helping people who are truly in need, what good are they? The reason organisations like this can fall into such unhelpful practices is precisely because people are either not strong enough to stand up to them or because they are afraid of making a fuss or drawing attention to their hiv positive status. I think you're doing the right thing - and good luck with it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Hiya Iggy,Have you made contact with the intake clinician yet? That will at least get your foot in the door to begin addressing your needs, but also to effect the organization as a whole. If they were on the ball, they would have taken you in, and at the very least started with some testing so you can get a handle on where you stand with your numbers.Then you can do some recon on who the real movers, and shakers are in the organization.

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

Gosh, that's a sad commentary of an organisation that has such public notoriety. It's as if they have become too big for their panties. Sounds to me like they have lost focus of their mission statement. Regardless of that, I still hope you are able to mill your way through the mundane, and get on board with generating your own best destiny. Let them do the physical stuff, and let us help prop you up on the moral support end of things.I care about you, and so do many others here too. Hang in there hon.I sincerely hope to meet you one day, and give you the gigantic hug that I have in my heart now, and a big ole sloppy aids kiss all over your face.

PS- If they continue to treat you poorly, I'd go public on their asses, but I have always had better results by sticking to my father's advice......you can catch a lot more flies with honey, than you can with vinegar.

« Last Edit: September 26, 2006, 10:17:55 AM by Lisa »

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

dont give up....dont give in....tell anyone who will listen....keep in touch with ppl on here just to have a ground.after over 20 years poz I have found that if you dont take things into your own hands you cant complain even if the reason you are upset seems to be beyond your control.I have been poz since 81 and have become more active than I ever would have thought I would.it is most importiant that you get the care you need so if it means going to the press take it there...much love

I am so sad to hear something like this is going on in this day and age of what I thought was a more compassionate era of medicine and care....I say as a person living since '81 dont give up and don't back down...if they don't respond tell everyone that crosses your mind.it is most important that your voice be heard.you need help and they claim to give it....it will give you strength you will need to keep on keeping on.I have been a member of the Ryan white planning council here in San Jose for 5 years....and am the chair for the faces with a voice caucus and also I am a member of the community prevention group and am a regular reviewer of proposals from potential service providers for the county health office for aids/hiv ....none of which would I have ever thought I would ever do even 6 years ago let alone the 20something that I have been living with aids.it all started when I was asked to attend a meeting concerning the potential but in the long run unavoidable loss of our complimentary therapies.with all the cuts to public health funding it is imperative that if you are able to keep things like this from getting out of hand....sometimes we have to fight to live....sometimes me must live to fight ...don't give up

I've talked to so many people recently and the general (and disheartening) consensus about my experience with GMHC is that they have heard it all before. It seems that I am one of many who have faced this with them and they will never change. It sort of leaves me feeling like I don't give a shit either to be honest.

Remember what I said the other day about how organisations get away with shoddy services? (The reason organisations like this can fall into such unhelpful practices is precisely because people are either not strong enough to stand up to them or because they are afraid of making a fuss or drawing attention to their hiv positive status.)

I'm wondering if it is possible for you to band together with (at least some of) the other people who have had similar experiences with GMHC and present a united front? There truly is power in numbers and you can give each other moral support that will be much needed during your fight to get the organisation to go back to what they're supposed to be about - helping hiv positive people make their lives livable. Here is the GMHC's Mission Statement, taken directly from their website: (emphasis in bold is mine)

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Gay Men's Health Crisis (GMHC) is a not-for-profit, volunteer-supported and community-based organization committed to national leadership in the fight against AIDS. Our mission is to reduce the spread of HIV disease, help people with HIV maintain and improve their health and independence, and keep the prevention, treatment and cure of HIV an urgent national and local priority. In fulfilling this mission, we will remain true to our heritage by fighting homophobia and affirming the individual dignity of all gay men and lesbians.

Lisa has a very good point about drawing more flies with honey than with vinegar. Maybe you could go about this from the perspective of "we have all had access problems with this organisation and we have banded together to see if we can't help you make the changes necessary to stop people in need being turned away." If you don't get the response you want/expect from being nice and wanting to work with them, then you can go public with the complaints and stir the pot.

The bottom line here is that when people come across this kind of thing and say "it's no use, they'll never change", well, of course things won't change. The status quo WON'T change if people don't make that change happen.

You'll certainly get loads of moral support from me and other members of these forums if you decide to pursue this matter.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I've known Marjorie Hill for many years. In fact I ran into her at the Toronto Conference. I don't have her current e mail address but I will see if I can get it so that I can send her this entire thread.

Iggy,The requirement for Proof of Positivity (POP) is an unfortunate extension of the disorganized and fragmented system of healthcare and social services we experience in this country. Currently in San Antonio the HIV Services Planning Council is working to foster and coordinate communication between the various ASOs, private physicians and the three major medical systems in the area. Currently I am a student working on educating myself so that I will have the necessary background to do some real work to reform the system, but your experience highlights well the advantages to a single system for the aquisition of medical and social services. In such a system your entire medical history would have already been available to the individuals needing such infomation, as you began to need and became eligible for these services a case manager would already have been aware of the situation. In the mean-time, until such a system can be realized, the best advice I can give you is simply to remember that system fall apart usually for a single reason: people are involved. People make mistakes, and the set-up flawed systems.

WOW! If you're not careful, you may have just created a position for yourself. If this organisation had half a brain they would be seeking additional meetings with you. I am in awe of your ability to focus so clearly on issues of organisation, as well as reminding them of what their original goal was. You are emerging as an excellent advocate. You go boy!!

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

I have been reading this thread and I have to say, "Bravo !" You are seeing the reality of AIDS, Inc. Its important to be public about what you have experienced because it is everywhere. But on a more serious note...your more important and getting the help you need should be job #1. Take care of YOU first...then kick their ass.

This is not just an isolated incident, I can assure you. Ann was right in her comments to you but I don't think people realize how much exploitation is now involved in organizations originally founded with the best of intentions...its all smoke and mirrors and great PR. I am sorry you experienced this but you can turn it into a positive. BTW, you really do have a gift of self expression and the passion of a true advocate. Remember, TAKE CARE OF YOU !!!!

Hi Iggy,I found your telling of this riveting. When I finished the last post I too thought "BRAVO". I also thought that this mission has given you a purpose, for now, at a time when you really needed something.

I've had very little dealings with GMHC, other than not making it into NYC in time to get on line on a Saturday morning for testing by 10AM. BUT , I got their # and called , and a woman asked me where I was located at the time, and directed me to 9th Ave NYC DOH, where I was able to get tested that day.

On the other hand, my walk-in here on LI as well as the NYCDOH, both referred me to Callen-Lorde. They screwed me around so much, I was so stressed out from the unreturned calls for an appt, then many many appointments , being turned away from my confirmatory testing appt because i was 30 minutes late for the appt (bad traffic that afternoon, but they didn't care that I drove 70 miles, 2 1/2 hrs), lost results, missing sections of later results, etc.... 7 months, no physical, no vaccines, not much. I left there convinced they are only there for more #'s for funding. In the beginning I wasn't eligible to see a mental health professional there, because I had insurance. I have no doubt they are good to you there, and I'm very happy for that. I can't help but think I was somewhat prejudiced against because I wasn't from NYC and I have health insurance. I did eventually get to speak with the director there, who after many calls and some yelling, allowed me to pick-up my medical records in person rather than mailing. She also said my case would be discussed at their next board meeting. It was then that I found out they 'neglected' to test my T-cells last lab!

I'm not hi-jacking your thread, just throwing out there that apparantly not many of these ASO's are running smoothly 100% of the time.Like Lisa says, you may have found a new purpose for yourself, but like Greg says, take care of yourself first.

Keep up the good fight, my friend. I wish you all the best. I'm hoping to meet you one of these days, don't forget about SIN Saturday nights, when you're up to it.

Hi Iggy, i don't come much to this forum and only got into your thread at the point where you met Daniel Blausey. I started back tracking and then read you last post where I feel I want to say something.Like you my first time at GMHC I didn't have proof of my status, I actually just got fired from my job in the Village. But at the point our experiences end. I was seen to a few times about legal issues, I am not sure exactly when I did join, but one thing lead to another and I joined a program that was part of SUNY there. This led to doing volunteering/internship to doing part time work there.My experience with the organization has been pretty positive actually (pun intended).

I also can say that the organization takes grievance procedures very seriously as one of the first things as a client I was handed was a complaint form. I have yet to use it since December 2004, when I started to use the facilities on a regular basis..I would also like to state that many of the volunteers and part timers are people like you and me, people living with HIV.I don't want this to come off as trivializing your experiences with GMHC, which is why I haven't written in but mine were totally the opposite.

As for others not chiming in I surmised that this thread was more on your dealings with GMHC, than a hard look at CBO's

Quote

Modified to remove "advice requested" from the subject line - as this thread has moved from requesting advice to detailing my experiences.

Good luckJohnny

« Last Edit: October 05, 2006, 04:28:03 PM by alisenjafi »

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"You shut your mouthhow can you sayI go about things the wrong wayI am human and I need to be lovedjust like everybody else does"The Smiths

I really want to start a ripping commentary on some of the recent posts...but Iam just going say a few simple things. I find it very frustrating to see how WE have allowed ourselves to be treated.

With all of the information and experience in these forums I find it hard to believe anyone would even attempt to separate issues like employment, housing, health insurance coverage, socio-economic disadvantage, depression or any of the other direct effects that a diagnosis of HIV has on an individual. Trying to address HIV infection in an individual needs to be a holistic approach. This is not just a physical condition like a diabetes. It is a condition that impacts the entire person and needs to be address as such.

ASO's of every kind have failed to provide a comprehensive treatment plan that addresses vocational, educational, social and economic issues present in all hiv infected persons. Trying to treat a person with HIV / AIDS by providing a visit with a specialist and a pill is like a bandaid on a gunshot wound.

Case in point, Iggy's experience did more damage than good to the person....it should not be allowed to happen. The basic foundation of all service organizations is to DO NO HARM !!! If an organization has set a policy that a client must prove their hiv status BEFORE intake, then they better have a testing lab on-site, free of charge, to prevent situations like this from happening. As a healthcare professional myself I have never encountered a client with diagnosis documentation in their pocket. A simple release of information authorization form should suffice and does for EVERY other healthcare related organizations. Freaking armatures.

I will stop here before I really go flip-in-dicular ! Sorry for my fragmented fury.

I cannot help but feel that we need a slight perspective shift. Iggy, I understand what you're saying about trying to spread already thin resources thinner, but instead of fighting for the concentration of services, would the hiv community not be better served by fighting for increased funding? Perhaps Flatfunding is the real culprit here.

Sheesh - Flatfunding - reminds me of Flatearthers. In other words, those in power who hold the purse strings seem to still believe the earth is flat.

We don't seem to have the organisation of the activists of years gone by. Perhaps it is because the lack of urgency so many seem to feel. Will it take being flatfunded into oblivion to get people to organise and fight back? From where I stand, it would seem the ASOs are headed by people who are just in it for the paycheck, and a fat paycheck it is in many cases. Is this yet another example of the malevolent corporate influence that is hurting so many around the world?

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Lets face it - activists don't do well in the paycheck department when they bite the hands that feed them.

Bingo! You said a mouthful there. When I was working at a substance abuse "NGO" charity that was separate from, but funded by, the local government, we despaired at many of the government's drug policies but couldn't say a word if we didn't want to be underfunded out of a job. I had to go off on sick leave and never went back - and a big part of it was my reluctance to toe the party line when I knew they were dead wrong on so many issues. I found it soul destroying in the extreme. I got the last laugh in a way though, because I now consider myself to be working from home (which allows me to make any allowances for my brainfog or dire-rear or otherwise aids-days I need to) for a world-wide ASO while being paid by a government that offers its citizens no real hiv information. The pay sucks but I've got a roof over my head and more importantly, I've got my dignity and my principles intact.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think your starting to see AIDS, Inc. for what it is. When public visibility is reduced and lobbying efforts lax, funding is easily cut. This is what has happened. AIDS, Inc. is not about service to PWA its about building someones public service resume'.

Presenting the real need for comprehensive HIV /AIDS services is really in the best interest of everyone. Comprehensive Treatment Plans save lives, improve over all health, reduce long term costs through intervention services and decrease negative outcomes so individuals can return to being productive members of society.

To be honest, I have never been very impressed with ASO's model of care. They are sloppy and often leave large cracks people fall through, when they are not being pushed in to them that is.

I do know there are many who want to do the right thing but are often prevented. Yet conversations like this are pointless unless accompanied by effective action.

I think we need to be careful here. "AIDS, Inc." is a mighty broad brush. What needs to be done, rather than throw the baby out with the bathwater, is to find the snakes in the bath and throw them out. We need to reclaim the ASOs, not denounce them as a whole. I'm quite certain there are many people who work in and with ASOs who are doing the best they can, within the structure they're given, to do what's right for people living with hiv. I don't want to be responsible for alienating these people with the "AIDS, Inc." moniker, we need them on-side.

It seems to me that a return to the grassroots is what's needed, however the problem is apathy and also just like real grass that goes brown and dies, being pissed on by dogs. Iggy's situation is a case in point for the latter.

I think the biggest problem is apathy. Apathy dictates that people being pissed on by the ASOs goes unremarked in most cases. Apathy means no one is bothering to hold the ASOs to their mission statements. Apathy is thinking someone else is taking care of the situation.

Juzme, you are correct when you say that conversation is useless - we can talk about it and moan and groan until we're blue in the face, but only effective action will change things. But what is effective action and how do we achieve it? There's not much I can do as I don't live in the States, although I am American by birth and what I see happening over there (both in general and hiv specific) leaves me feeling very angry, sad and powerless.

I know we need to re-light the fire of activism. All we seem to have now days is a few glowing embers, but that's a start. I've read the history of hiv activism, but maybe I need to go back and re-read it for inspiration.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I'm in San Francisco, am a long-term survivor, and there are NO support groups for me. The AIDS Health Project, the primary provider for mental health services here, doesn't care. They are more concerned with funding, parties, and appearances rather than people.

I was in a group there (no longer listed) and quit when it came to light that the group was no longer a "support group for HIV Positive Gay Men" but now a "therapy group for people who happen to be HIV positive". This happened secretly without anybody telling anybody Rule #1: No outside contact with other group members. How is that healthy? It's more like the "Fight Club". They said my attitude was "too negative"and I should change it to fit the group expectations or leave. Since my attitude has kept me alive for 16 years, I decided to live without the group, which in the end only suppressed me, not supported me.

I've totally given up on ASOs (and POZ magazine) and will never fully trust anyone who isn't a gay man with AIDS. Blame whoever, I still don't have help. There are literally thousands of others in this city just like me. Even "NeuroAIDS" isn't enough - now I'm just a crazy man.

Iggy, Ann, Jack...Wow...! I think AIDS, Inc. is perfect because that IS the problem. Anyone in an ASO who is fighting the good fight would agree and support change.

I have been around long enough to know that even a full frontal assault on all ASO's will not cause a collapse of the system..lol..the system is federally funded. However, seeking to remove the blight of AIDS, Inc. from those organizations is simply common sense not an attempt to commit genocide against all ASO's.

The truth is that you have each touched upon a great truth. The way AIDS, Inc. and all other service organizations controls the masses of individuals they claim to serve. These type of organizations use the stick of "lack of funding" to beat everyone into submission. Intimidation through the threat of their absence. This not only works, its effective in immobilizing attempts to bring about change.

Iggy and others echo the result of this masterful manipulation when they believe they are an isolated incident or that they are powerless against Goliath! The result is that human being become cattle to those on the top of ASO's then we are easily directed to the slaughter house of indifference.

In order to get the snakes out of the bath water, you have to first come to terms with the fact that the water is useless to anyone as long as there are snakes in it. C.S. Lewis once said, "You can not bring even the smallest piece of hell into heaven..." Think about it Ann, would you really bathe in water that was infested with snakes or let the baby bathe in that water even after the snakes were removed? NO!

Fear that we could do harm is an issue that must be taken seriously. However, given the state of the union at AIDS, Inc. the risk is greater if we continue to keep silent. As I said earlier, I really do not think there is a great danger of any serious collapse of ASO's or the services they provide if PWA actually hold those organizations responsible for their actions. I think it is time that PWA begin to retake their human dignity and stop acting like lepers that need to hide themselves.

HIV /AIDS is a health related condition. END OF FUCKING STORY ! We give others power over our lives when we lack confidence in our right to be treated with respect and compassion. Shame is not something that a PWA should ever feel because they have a health problem. We allow others in AIDS, Inc. to use our fears and insecurities against us when we act as though we are comfortable in the familiar realm of sitting in our own shit. TELL ME WHO HAS A RIGHT TO EVEN ATTEMPT TO SUGGEST A PWA'S IS WORTH-LESS THAN ANY OTHER HUMAN BEING... Yet, if we accept being treated in this manner there is none who can save us. No one can do these kind of things to us unless we give them our permission.

Iggy did the right thing...he challenged those who blew him off. That is step one...stop allowing yourself to be abused because HIV / AIDS is a part of your life. THAT is called discrimination and it is illegal.

Think about that... An ADA suit filed against an ASO for discriminating against people with HIV / AIDS. That is not so far fetched as you might think. It is not a place I would ever want to see us have to go. However, I will say this I have had to threaten legal action against some of our countries largest supporters of the "fight against AIDS discrimination". When the discriminatory actions of such organizations is directly confronted and challenged guess who has the power and guess who is afraid.

The simplest things we can do are to write letters. Contact and CC. the funding chains and the organization's chain of command when ever there is an issue. It would be beneficial for each person who has responded to this thread alone to write a letter referring to Iggy's experience and simply state that this behavior is unacceptable.

I think you might be surprised what might happen. Either there will be a positive response or there will be a greater exposure of the corruption. Each letter and each response becomes legal evidence that can be used in court...used in a congressmans office...used in a senators office...used in the newspapers..used, used, used until there is change.

Each of you is more powerful than you think, it is only fear that keeps you from having any real impact on these kind of situations.

If what I say seems harsh, I think that sense is directly correlated to the degree of fear and apathy one has. If someone treated your child with a health concern in this way ... I can assure you that you would not be so accepting of such outrageous treatment. If an organization will not maintain its own Mission Statement...it has outlived its usefulness. It is better to take such an organization out of commission then to allow meager half-hearted services to be provided that only serve to degrade and demean rather than preserve the human dignity of the recipients of those services.

Maybe we are just afraid to see just how deep the hole really goes at AIDS, Inc.?

As always you make many very valid points and I agree 100% with what you said. I would like to be a little clearer on one point I had made.

I am not for ripping apart any ASO and starting over unless it is absolutely necessary. To protest and document (because in the end the one with the best documentation wins) all complaints and inadequacies is the simplest way to bring about change if people would just follow through with an issue until there is resolution.

More to the point, if protesting the behavior of an ASO were to result in a mass media frenzy and thousands of people in front of that org with signs...I am sure they could survive having to deal with correcting their behavior. I was not suggesting we should tare down anything...just have enough respect for ourselves to hold those responsible for assisting PWA for their action and lack of action on behalf of those they claim to serve.

Wow again.I do agree that your own health is of the first importance, but you have still managed to not only get your foot in the door, but have been a steadfast activist of your own making. I agree that some of the e-mail response to you did sound a tad robotic, but at least you have gotten the attention of some of the muckie-mucks. That dear sir, is no small feat. I have been checking this thread often, because your updates are so well thought out, and concise.Take good care of yourself, and get back some of your old vigor, because I see a whole new world opening before you.Much respect, and bunches of kisses for you friend.Go get'em honey.

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No Fear No Shame No StigmaHappiness is not getting what you want, but wanting what you have.

I'm sorry, Iggy, but I read all of your posts on this thread, and I think you are being really unfair to GMHC and similar AIDS organizations. Every organization (corporate, public, or non-profit) is going to have at least a few employees who are incompetent, uncaring, poorly trained, or who provide misinformation to people who go to them for service. It's unfortunate that everyone who works in an AIDS organization can't provide a perfect experience for every person who walks through their doors, but are GMHC And other AIDS organizations really any different than any other organization in this respect?

To characterize an entire organization and its staff as bureacratic and uncaring because one receptionist made a mistake and one hotline representative interrupted you twice is, well, silly and mean spirited. It is destructive and self indulgent to make such HUGE generalizations and presumptions about an entire agency and its staff based on your personal interpretation of a few interactions with a few employees. (Based on the volume of your writings in this thread on these incidents, I have to wonder if the hotline rep who interrupted you was just trying to get a single word in edgewise over your monologue.)

My experiences in getting services from GMHC, Callen Lorde, and other AIDS groups is that there are some bad apples, some excellent and caring staff, and a lot of mediocre employees - some who care and some who are just getting a paycheck. If you can identify a single organization that differs from this pattern, I would like to learn about it.

Doesn't GMHC have an HIV testing service in their building? If you needed proof of being positive in order to be seen, didn't you have the option of getting a test from them so that you would have your proof of being positive? It would have taken a LOT less time to get tested so that you had your proof than all the time it took for you to create this series of shaming posts about two employees in a large organization who didn't give you quality service.

I mean, would you similarly conclude that no one should shop at Home Depot because one employee pointed you to the wrong aisle for paint and another employee rang up an item twice by mistake? Would you rant about how all hardware stores are failing their customers? Of course not. Perspective, Iggy, perspective.

I just wanted to mention that it IS entirely possible to get top-rate service from an ASO and indeed, we should expect no less. The ASO I have dealings with (Sahir House, Liverpool) understands that the health and well-being of its clients are at it's very core - that's CORE, not DECOR. All staff, both paid and volunteer, are trained to a high standard before they are ever allowed to sit at a public reception desk and consequently the type of experience Iggy had at GMHC would never happen at Sahir House. Thank goodness!

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts